no maintenance meds required

It's hard for me to believe any medical doctor would tell a Crohn's patient NOT to be on a maintenance drug...but I guess there are some doctors (even GI's) who don't see a reason for them.  Maybe there's a reason not to take them after a resecion surgery which I'm not aware of.

But Crohn's Disease is not (yet) curable; however it CAN be manageable in many cases and the only way to manage the inflammation of Crohn's Disease is through maintenance drugs and MABYE combined with anti-inflammatory foods.  Then, of course, often times stronger drugs are needed.

No matter what people have been through with this disease, there's no DOUBT it affects us mentally and often puts us into a depressive state of mind.  Maintenance drugs won't necessary directly help that but if the maintenance drugs help keep inflammation down and make your wife feel better physically, maybe she'll feel better emotionally, with time.

 

After each of my resections my docs have taken me off all or most of my meds.  I was ok for several months each time, but eventually restarted some of the meds as the CD started to come back.  I was never depressed after the surgery.  In fact for me I always felt my best for the first several months after a surgery.  I felt like I had more energy and just felt better overall. My resections are always in the terminal illium.  Where was hers?  Maybe different locations have different affects????

It is very difficult to come to the realization that you are really sick and this disease isn't going to go away even with surgery. I was depressed after surgery, I felt very vulnarable, old and useless. Try to persuade her to go to just one appointment and she will see how much better she feels and hopefully will want to go backt. Wishing you the best of luck.

I have been on maintenance meds (Pentasa) for 4 years, which I started immediately after my resection in 2005. I felt so good that I foolishly started weaning myself down to just one dose a day this last year. Many days I was convinced that I didn't have the disease. I am headed into a flare now, and sincerely regret that I started weaning off the meds on my own. I will NOT make that mistake ever again.

Best of luck to you guys!

Joyce

Both my surgeon and my GI told me to stop all medication after my resection in Feb 2009. He wants to do a colonoscopy 6 months after the operation to see how the disease is progressing if at all. My Gastro team don't believe in taking medication if the inflammation site was removed at the time of surgery. The GI said he will discuss medication again after the check colonoscopy. 

i was told the same - i didn't need maintenance meds - i get where your wife may be coming from - from my own perspective - i can look back now i say this! It was freaking me out - i didn't realise how much it was - i think psychologically crohn's patients need a maintenance med - even if its just for a placebo effect. my own family doctor on the other hand also has crohn's and is on no maintenance med - but as he says hes an exception rather than a general rule. its only natural for your wife to be affected by this - she may not even know it - however i really think that she should be on a maintenance medication - if only to prevent inflammation which can cause scarring and have its own problems - i would be sceptical of a doctor saying that - if i was your wife & i was i'd get a second opinion if - IF she feels crohn's wise that her gut wont be able to handle having a maintenance medication. I got a second opinion who - said straight she didn't understand why i wasn't on a maintenance medication & she spent like a half hour shaking her head in dismay:) now it may be your wife's crohns is on the mild side in terms of what the dr sees on a scope (not to say your wifes symptoms are mild they may not be) - and he/she is thinking oh that womans crohns isnt too bad so it may do ok without maintentance - however you said you wife had a resection - pentasa is proven to reduce the likelyhoood of recurrance after resections - she may not feel it but it may help - its highly recommended to take it in fact after surgery!! How are her b12 levels - they can leave you feeling not yourself? look into her nutrition state - maybe theres something lacking - a blood test can be done to check b12 & iron - common culprits in the drag down your mood area. Are you & they sure she's depressed? B/C my doctors tried to convince me I was - its a really long story but the gist of it is I wasn't standing up to them & insisting I wasn't well enough - i put up with a lot of personal comments which were well quite personal and not nice - this did eat into my confidence - but something hit me that i had to learn how to shout - is your wife on the quiet side when dealing with the drs? B/C it does and will not get you anywhere - i've only recently realised this - and reclaimed confidence in the fact if i don't feel well i dont feel well & the source of it is in my abdomen & not my head - it can be quite damaging psychologically for patients to be forced into a psychological route when there may be a physical cause as there was in my case. I know i'm not the same as your wife but if there is the possbility that there is you should have a chat with her - tip if someone feels cornered they will clam up - so approach tactfully - and see how the dr/patient relationship is going in terms of teamwork and whether she feels listened to & if not why not. Gosh i went on for quite a bit here - you struck a nerve :) Hopefully something is of use to you and your wife. It must be hard for you too - she's very lucky to have you to support her - so give yourself a pat on the back as well!!

After my ileal resection in 1999, my gastrointestinal doctor (whom I'd only acquired from the yellow pages after being diagnosed, on an emergency basis) told me I didn't have to take any meds whatsoever--and I could eat a regular diet. I faxed him and asked him to please put me on Pentasa. He basically told me that if I wanted to try it, there wasn't any harm in it. I was in bad shape after 4 years on Pentasa--and didn't improve until a new doctor put me on 6MP.

I'm stunned when doctors tell you that you don't need meds and you can go ahead and eat whatever you want to. Idiotic!

I'd be staying on maintenance medication even if the doctor says otherwise. I think that in this case they're horribly wrong.